Yusra Al Nasiri
Oman College of Health Sciences, OmanTitle: Factors associated with health-related quality of life in children with sickle cell disease.
Abstract
Background
Sickle
cell disease is an inherited haematological condition with life-threatening
consequences. It can affect all aspects of the lives of children with the
condition, including biopsychosocial and cognitive aspects. These children tend
to have a low health-related quality of life (HRQoL).
Aim
To
identify factors associated with HRQoL in Omani children with sickle cell
disease.
Method
The
study was a secondary analysis of data from a randomised controlled trial
conducted with 72 parent-and-child dyads who were recruited from two tertiary
hospitals in Oman. The aim of the original study was to examine the effects of
an educational programme on the knowledge and self-efficacy of parents of
children with sickle cell disease. As part of that study, parents and children
completed two questionnaires on HRQoL, one generic and one specific to sickle
cell disease.
Results
Parents'
knowledge of sickle cell disease, parents' self-efficacy in managing their
child's symptoms, parents' age, children's age and treatment with hydroxyurea
were found to affect children's HRQoL.
Conclusion
Healthcare providers need to include biopsychosocial and
cognitive aspects of HRQoL in their assessments of children with sickle cell
disease. Programmes designed to enhance parents' and children's knowledge and
self-efficacy, as well as measures designed to ensure that children receive
treatment with hydroxyurea, are likely to improve the HRQoL of children with
sickle cell disease.
Biography
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